Responsive – are there any roads from criticism to action?
What is described as «responsive» in the English original is referred to by the Research Council as «dynamic and flexible» (3). The efforts involved in imagining the future, practising self-criticism and including other stakeholders in the discussions should be more than just an intellectual exercise; it should give rise to more reflective choices in terms of health policy, in the implementation of technologies and even in the research process itself.
Translating this requirement into practice is an experiment in its own right. We can provide an example from our own experience. A vital topic for our centre is the relationship between academic research and industrial innovation. Our research focus is biomarkers. In simple terms, biomarkers are molecules or other measurable biological parameters that provide diagnostic, prognostic or predictive information, for example about therapeutic response. In drug-based cancer therapy, many patients draw little benefit, and sometimes even considerable risk or harm, from therapies that nevertheless provide benefits at the group level. Potentially, biomarkers can help pave the way for a future when therapies can be better targeted. Moreover, if a biomarker does not involve major diagnostic costs, it can help improve the therapy without raising costs to the same extent as new drugs.
This, so to speak, it the optimistic side of the coin. On the other hand, it is less easy to draw up a complete sociotechnical imaginary about biomarkers that also promises a viable business model for the pharmaceutical industry. It is a boon for patients to avoid taking drugs that are of no benefit to them, but from the industry’s point of view the sales of each drug will decline. Biomarkers in combination with personalised medicine will result in small patient groups that will undergo the same treatment. The price per patient will therefore rise, and conflict with the limits that the authorities will fund through the public purse. In informal conversations with some industry stakeholders we have therefore seen a lukewarm attitude to biomarkers.
Moreover, there are major knowledge gaps, for example with regard to what makes a biomarker a good biomarker. Kern (14) points out that only one per cent of all biomarkers that are launched from biomedical research end up being applied clinically. As conscious and reflexive cancer researchers we therefore need to combine our belief in working for a future where there are more precise therapies that do not accelerate costs, with doubts regarding the realism and economic viability of this vision. This is a challenge, including in terms of motivational psychology. However, we believe that removal of the false security provided by exaggerated optimism about the potential in basic research will spur creative thinking.
Could other principles for payment of drug-based cancer therapies be envisaged (15)?. Could we envisage a future when patents and profits play a lesser role, thus making biomarkers less of a concern for the industry’s business models? Such questions are relevant for choices in clinical trials – for example whether the researchers primarily seek to test new drugs or whether they would rather attempt new combinations of known drugs. These are difficult considerations not only for individual researchers and research groups, but also for institutions that fund research when designing their programmes.
«Responsible cancer research» as defined by the RRI framework does not make a researcher’s life easier, nor more productive, perhaps, when measured in the short term and according to conventional criteria. Nevertheless, given that the complexity in the relationship between science, technology and society has been recognised, the alternative appears problematic, both ethically an intellectually.